The 2nd Annual Take A Bough event was held at the Galleria at Pittsburgh Mills, November 18 - 21. It was an exciting year for the Chapter, as we raised over $45,000 on this annual event. We are extremely grateful for the donations we received from our Chapter members, our partner organizations and the new donors who offered their support for the first time.

Planning and preparation for the 2nd Annual Take A Bough event began in February of 2011. We truly appreciate the hard work and dedication of our volunteer planning committee. Special thanks to the following committee members: Rita Dull, Melissa Kendrick, Nora Latcovich, Debbie Lowery, Scott Miller, Dawn Rotellini, Sam Rotellini, Diane Standish, Laureen Temple and Maria Steele-Voms Stein. In addition, a big thank you goes to Casey Mahaven, of Mahaven Events, for helping coordinate the entire event.

Take A Bough 2011

Chapter News

Winter 2012Inside this issue

Chapter News ................................ 1Letter from the Executive Director ... 2Calendar of Events ....................... 2Spotlight on the Member ........... 3Sponsors and Donors .................. 4Medical News ................................ 8Chapter Board and Staff ...........11

If your company is participating in the United Way campaign, you may designate all or a portion of your gift to the Chapter.

WPCNHF Contributor Agency Code Number is: 83

DESIGNATE UNITED WAY GIFTS TO THE CHAPTER

Nine First Step families gathered in Erie, on October 14, for a virtual tour of the emergency room (ER) at Children’s Hospital of Pittsburgh and a discussion on ER visits. An in-person ER tour was prohibitive, due to certain rules and regulations at Children’s Hospital, so Kristen Jaworski, R.N., B.S.N, CCRC, of the Hemophilia Center of Western PA (HCWP), brought the ER to us! She walked us through photographs of the hospital and different stations in the ER. The group discussed all stages of the process from what to do before you leave home to following up with your doctor the next day. Throughout the program, the families shared experiences and tips with each other and created a list of items to pack ahead time, in an ER bag, to help make the trips to the ER go more smoothly for all family members.

While the parents participated in the meeting, all of the children (many young children) were supervised and entertained with activities, by volunteers. We sincerely thank Laureen, Sarah, and Grant Temple, and Scott Miller for the gift of their time and energy, so the parents could participate in this program.

Continued on page 9

Decorated holiday trees at the 2nd Annual Take A Bough Event

Kristen Jaworski, RN, BSN, CCRC of HCWP discusses ER preparedness

with First Steps families

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Letter from the Executive Director, Jennifer Wahlen PegherDear Members,

Over the past several months you have seen some changes at the Chapter. From the Winter Family Program (previously the holiday party) to the request for a deposit for Family Education Weekend, these are just some of the changes we have made to ensure the Chapter is here for you and your family for years to come.

As our board President Scott Miller noted at our Annual Meeting in July, several pharmaceutical companies have changed their regulations in applying for grants, and as such, this has required the Chapter to combine education with many of our fun events. It may seem logical to forget about those companies and focus on the companies that will not discriminate based on the location of the event. I understand your concern; however, forgetting about those companies is not possible if we want the Chapter to continue to operate as usual. The events you and your family attend throughout

the year are funded by all companies. Without every vendor as a participant, it is extremely difficult to continue to host events in the same manner as years prior. In 2004, the Annual Meeting aboard the Gateway Clipper cost the Chapter $12,000 for 361 individuals to attend. Today, the cost has doubled, yet the number of vendors has not. With that said, it is no longer feasible for the Chapter to continue to hold the Annual Meeting aboard the Gateway Clipper. I know this will disappoint many of you and many children as well; however, it is in the best interest of the Chapter to hold affordable events. This decision is difficult to make. This is also why there is now a refundable deposit requested in order for the staff to make a reservation for you and your family to attend Family Education Weekend. In the past, several families did not show for Family Education Weekend and other events, such as the boat cruise, despite their RSVP. As a result, it cost the Chapter several thousand dollars in no shows

alone. These unnecessary expenses are costs the Chapter cannot afford to cover going forward if we want to continue to service our members.

I know these changes are difficult to swallow and tough to embrace, but I ask that you consider the amount of money the Chapter spends each year to provide educational programs and activities for families in twenty-six counties. If we would like to keep the Chapter afloat, we must make these tough decisions and I hope that you will continue to support the Chapter by attending all events throughout the year. It is with you and your family in mind that each event is planned. Thank you for your support throughout the year!

Sincerely,

Jennifer Wahlen PegherExecutive Director

Saturday, February 25, 2012Infusion DayCranberry Township, PA

March 7-9, 2012Washington DaysWashington, DC

Friday, March 23, 2012Men’s Group: Power to Take Control and Pittsburgh Power Arena FootballPittsburgh, PA

Saturday, March 31, 2012Couples Retreat: Foundation of Intimacy and Healthy RelationshipsPittsburgh, PA

Tuesday, April 3, 2012Harrisburg DayHarrisburg, PA

April 27-29, 2012Family Education WeekendChampion, PA

Monday, May 14, 2012Driving for Bleeding Disorders Golf ClassicGibsonia, PA

Calendar of Upcoming Events

Ask us about sponsorship opportunites and how you can help!

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Michelle Moser is a 19 year old young woman from Mars, PA. Michelle has von Willebrands. When Michelle first heard of the Don Groves Scholarship, she thought it was out of her reach. However, she received the honor in July of 2011 and today she is a student at Butler County Community College where she just completed her fall semester. Michelle’s GPA is 4.0 and she made the president’s list in 2011. In her spare time, Michelle enjoys scrapbooking and she is currently employed at Joann Fabrics in Cranberry Twp, PA.

Michelle was diagnosed with vWD in 2006 as she had a bleeding episode. She attributes many of her successes in life to learning to cope with one of the biggest challenges of her life- vWD. When Michelle is having a bad day, she tries to remember her motto: “yesterday is history, tomorrow is a mystery, but today is a gift, that’s why they call it the present.”

She truly is an inspirational young woman. Her advice to those of you considering an application for the Don Groves Scholarship is simple: “Don’t let anything stop you. When I applied I thought I wouldn’t get the scholarship, but you should go for it, no matter what people tell you.” Congratulations, Michelle!

The Don Groves Scholarship will accept applications once again this year. The generous donor, the Charlie Miller family, will pass along a flier in the coming months. The deadline for your application will be June 29, 2012.

Spotlight on the Member: Michelle Moser

Dear Friends of WPCNHF:

Please plan to participate in our Harrisburg Hemophilia Awareness Day (including VWD) on April 3, 2012. THIS IS THE SINGLE MOST IMPORTANT DAY FOR BLEEDING DISORDERS IN PENNSYLVANIA THIS YEAR and we need your help. It takes many people to make a difference and we know we can make a great impact this year. With healthcare reform on the horizon and the ongoing battle between UPMC and Highmark, now is the time to let your legislators hear your voice.

We hope you will join us for the entire day as we make visits to local members of the PA House of Representatives and Senate to ask for their support of legislation that supports individuals with bleeding disorders. We will also ask legislators to continue to support state funding to the hemophilia programs in Pennsylvania. A bus will transport you to and from the state capitol. Further information will follow via email. If you would like to learn more or to be added to our email list, please contact Chapter staff at 724-741-6160. We know it is difficult for many of you to take time off of work or away from school, but it is vital that you make time to join us this year. Thank you for your consideration.

Please join us!HarrisburgApril 3, 2012

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Fairway 12Dick and Karen AbereggMandy & Ryan AbereggWexford AcademyAccredo/HHSDana AdipietroAffinity BiotechAmanda AhlersErin Alix-CrowdesTimothy AllisonAlex AlspachAmerican Electric PowerMeadville Ambulance ServiceKylie and CoopSarah Clayton And La’Hair Design TeamChristine AndersenBrooke AndersonJulie AndersonSusan AndersonJohn AshbaughTom and MaryAnne AustinLuAnn and Norm AycockCheryl BakerKaren BakerJohn BaltosSusie BalzerEileen and Chuck BarkerKen BarnettMichael BarnettRoz BarnettSpencer BarnettTerri BarnettLillian BaronePhil and Pat BaroneLaurel & Chris Barr & CormackReece BasehoreBaxter BioscienceBayerBayer HealthCareCourtney BealsLindsey BealsBell School of Irish DanceKevin BennettMichael BennettSheryl BennettCindy & Bill BerensonLinda BerndAmy BernettJennifer BertettoBeta Alpha Master ChapterVal BiasBig Burrito Restaurant GroupKristin Billings and FamilyBiogen idecBioRxBirdsfoot Golf ClubKeith BishPolly BittingMartha BlackstoneMark BlileyJohn BloughLauren BoccardiChristy BolenNorm, Laura, Sebastian and Isabella BonenfantLaura BoothNancy BosackBarbara BoyleMartha Blackstone & Robert BoyleEric BraderThe BradosJennifer BrauserBob & Marcie BrazerBonnie BridgeBarbara Britton

The BrodmansHarold BrooksDavid BrucknerHelen BruggemanDave and Clem BrumleyWilliam & Rita BrunoGrandma / BubbaBuchanan, Ingersol & RooneyJohn and Janet BurkenMike BurnLisa BurnsTom & Peggy BurrOlivia & Damion ButerbaughMelanie, Larry & Drew ButlerGladys & Steve BuzzellDavid BylerNatalie CaffallRachel CaleCamp Hot-to-ClotLaura CampbellJay CantorCaremark RX IncBrittany CarlgrenCarnegie Museums of PittsburghCarnegie Science CenterEd & Sean CarneyMolly CarneyDelores and John CarriolaChris & Valerie CarrollRob CarsonCasey Mahaven Events, LLCJill CassidyCasual Moments PhotographyNancy CatinaMark & Rae Jean CatraboneJanet Barone and Jim & Cameron CedenoDan and Marrianne CeredaChick-fil-A Ross Park MallChildren’s Museum of PittsburghJennifer ChristensenChrist’s Church MinistriesRuth ChubbuckPeter ChursinKurt ChuteLori ChuteRyan ChuteCitizens BankCity TheaterMichael ClanceyLaurie ClarkeNana and Popa ClarkeChris ClaypooleAmarisa ClaytonGary ClaytonNicholas ClaytonTrent ClaytonNicole CliffordBill, Lisa, Jake and Luke ClinefelterElyse Clyens NagyCali and Casey ColbertAshley ColeBarbara & Denny ColeMargaret ColeMichael ColeCourtney CollinsDonald & Patricia CollinsJohn & Audrey CollinsMelissa CollinsVictoria CollinsJohn ConelyGreg ConleyAlyssa ConnerMark & Ann ConnollyJim Constantin

Coraopolis NewsRachelle CotugnoDiane CouryChristina CoutchMike and Karen Covert FamilyEd and Phyllis CowanNathan CraigJen CramerMary CraneKim CrawfordMelissa CrawfordNorman and Carol CronerLoma CropchoAmelia CrosbySamuel CrosbyCSL BehringNancy CummingsPhil DaharEligio DalusioJack DaneriSandra DanoffDave & Buster’s of PittsburghHailey DavisNancy & Jeff DavisAlex DawsonLinda and Walter DawsonKathy DayAmber de AlmeidaMatthew DeemerRaymond DefazioJudy Delle DonneBen and Teri DeLucaIanessa Pediatric DentistryDick’s Sporting Goods (South Hills Village)Bill DietrichDiplomat Specialty PharmacyDirect EnergyMaureen DitsonPaige DitsonMatthew DobishPatrick DolanRose DorseyKim DouglassErik DrotosKitty DuchiSteve DuchiErica & John DudashEd DudzinskiMichael and Laura DuffyRita and Andy DullJennifer DumontDick DurstDoug & Mona DuvallE.L.F. EntertainmentGeorge EaslerRich EaslerRoseanne EaslerCyndi EiselShannon EisenbergBrian and Tamara Ekis and FamilyKathy EllisTerry EmlingPlasmaCare Employee FundraisersAnslene EncisoEprescience, LLCErieZSara ErwinDenise EskelsonGeorge and Cynda EspyThe EtstathiouJessica EvansDawn EvansSusan EyrollesJenny Fair

Debsiki FamilyThe Nuccetelli FamilyThe Beam FamilyThe Januck FamilyThe Lisica FamilyThe Mathews FamilyThe Wolfe FamilyBeth FazioJulie FazioDoug FerraroFirst Class EntertainmentFirst in AwarenessJohn and Tracy FleckAdam ForteAdam FoustPhilip FriedmanStuart and Vicki FronkFun Fore AllSchwans FundraisingBev GGE FoundationJim and Barb GalieDeanna GallagherCindy and John GardinerKimberly GardnerKelly GaryGateway Clipper FleetPhillip GaugerBill GdaniecCatherine GdaniecKaren GdaniecRobert GdaniecTom GdaniecBob & Cathy GearingerCheryl GeierMelissa GeislerGeneral Rental CenterDonna GeorgeGeorge A. Pegher, IncSandra GhostGiant Eagle McIntyre SquareGibsonia Walmart Store #2603Paul GillCindy GillettLuca GiorgiGlaceau/Vitamin WaterGlades Pike WineryLauren GlasserDarby GormanTeresa GormanStina GorsicAlex GraceJason GrahamEd GrahamJane GreeneGreenhouse WineryBarb GreggGreycloud StudiosCindy GricheckGrifolsCarla GrobCary and Heidi GrossNathan GrovesDebbie GuerraJody GuerriniFrank GuessGeorge & Teddi HackettHampton DentalBob and Ann HarrisonRonda HartzelHemophilia AllianceHemophilia Center of Western PennsylvaniaJoe and Christen HerndonNathan Hileman

A Special Thanks to our Generous Sponsors and Donors from 2011. They are as follows:

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Chapter Outreach

Put salt pork where? Can tea bags really help stop bleeding after a tooth extraction? Is acupuncture an effective option for reducing pain in people with bleeding disorders? Do these alternative methods work and are they safe? Kristen Jaworski, R.N., B.S.N addressed these topics and much more during her presentation, entitled Complementary and Alternative Medicine: Can it be used for Bleeding Disorders?

Kristen and the attendees discussed the facts and fiction of treatment claims for using complementary and alternative medicines to stop bleeding or reduce joint pain, during the Erie Outreach event held in October. This program was both interesting and enlightening! The Chapter has received very positive feedback on this program and hopes to offer it again in other areas of our region. In fact, one of the goals for the Chapter this year is to continue to expand our outreach program throughout Western Pennsylvania. When possible, we plan to offer specific educational sessions in multiple locations, to better accommodate and serve more of our members in outlying areas (as we did with the dinner program entitled Factor Forward: An In Depth Look at Breakthrough Therapies and How They Will Impact You and Your Factor, which was offered in both Pittsburgh and Erie, in the month of November). Of course, regardless of where an event is held, all of our members are always welcome to attend and we hope to see you throughout the year!

Please join the Western Pennsylvania Chapter

of the National Hemophilia Foundation

for a Couples Program facilitated by Inalex

Communications speaker Jack Kakolewski

“Foundation of Intimacy & Healthy Relationships in Coping with

Bleeding Disorders”

Saturday, March 31, 2012

Please join us for a follow-up couple’s session from the 2011 program, “Ways to Maintain and Deepen your

Relationships”

This program is for couples only!

Space is limited so RSVP today.Participants must be 21 years of age or older.

When: Saturday, March 31 at 10:00 a.m. until approximately 2:00 p.m.

Where: The Renaissance Hotel, 107 6th Street, Pittsburgh, PA

Who: Couples in a committed relationship who are affected by a bleeding disorder

RSVPs must be received no later than March 5, 2012 to rsvp@west-pennhemophilia.org or 724-741-6160

Please include the following information:• Names and ages of both attendees• Phone number • E-mail address

Children are not permitted to attend this event. There is no daycare provided for this program.

In 2011, WPCNHF hosted a session for couples entitled, Ways to Maintain and Deepen your Relationships. Though this is a follow-up session, you do not have to have attended the session in 2011 in order to attend this session. This is a relationship coaching workshop specifically for couples with a bleeding disorder or those raising a child with a bleeding disorder. In a supportive community environment, participants learn practical tools and techniques, strategies, skills and goal clarity to connect more closely with the one they love. This session is for couples in a new relationship who want tools to start off successfully, as well as those in long-term, committed relationships who want a deeper connection. In addition to the main workshop you will have the opportunity to spend quality time together and network with other couples navigating the same situation.

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Chad, Heather, and Connor HillegasGene HillegasMary HillerDavid and Lenore Hiller FamilyMark HiltsThe Hoffman FamilyKristin HokoyamaHoliday Inn Express (Delmont)Bonnie HolmesCheryl HomistekRyan HomistekTom HuetAlan HuffmanShannon HughesWendi HunterKim HusenitsIceoplex At SouthPointeKaren InquartanoThe IntuterisAnna InversoPete InversoBarbara IppolitoITXM - Central Blood BankBeth IvanicJ.C. Orengia Landscaping, Inc.Miss JaciKristen JaworskiZolina JevackAmanda JevittJimmy Stewart MuseumMay JinEric & Kathy JohnsonKimmie JohnsonCheryl KamerKavic WineryPat and Peg KedleyDeb KellnerCaleb KempDan & Kendra Straub Ken & Carol BeaverMelissa KendrickPenny KennedyThe KernicksSally KerriganJanet KetteringJoan KilbyChristopher KitnerMary Lynn KitnerJoe KleiberJessica KocsisDanielle KoehringNikki & KoryMarijo KraisingerKraisinger’s MarketDan KramerJack KramerKatie KramerKris, Heather, & Garrett KramerMeg and John KrenitskyMary KubiakCindy KundeKarl KunzWayne KurtKelly KuzemchakGail LambertJana LambertWarren LandisMark LaneMegan LarkNora LatcovichLaurel Highlands River ToursKelly LavinLe MontSharon LesterMarv LevinKatherine Lewis

Taylor LichtyRenee Lichty-BodnarKristin & Michael LightMary Lee LinsenmayerMargie LinvilleEmma Jean LipniskisJeff, Antoinette and Sarah LipniskisKay and Charles LittleJanice LloydGary & Darlene LockeLaura LoganJackie LongoAmanda LorenziMarlene LotzmannMary & Terry LoveDeborah LoweryCari LyleTerry & Penny LyonMike & Annmarie LyonsMichael M.Renee MacKenzieGloria MadineSpero MaginasCasey MahavenLindsey MalinowskiMelanie MalyukMindy ManciniJoe MancusoJoy ManesiotisTheresa MangoldTammy MankoCindy ManningVicki MansfieldLarry & Karen MarineCheryl, Daryl and Jeryl MarksAlison MarschkeLynn MartinTom MartinDr. William MartinLori MartinoskiDiane MartyMary MarxKim MarzulaLori MasonCaroline MatteoAunt Judy MaximenkoLinda MaxwellWilliam MaxwellMatthew MazonkeyScott MazurTina MazzoccoDon McCalmonThe McCarron BoysLorraine McCarthyStacy McCarthyChris McClimonJake McCuneKatie McCurryJean McGuireJim and Joan McGuireJoe and Dee McGuireMatt & Amy McGuireJudy McIntireGwen McKennaJody McKernanPamela McNallyDr. Michael McSkimmingRenee MeadorMeadowcroft Rockshelter and Museum of Natural lifeMeadville Area Ambulance ServiceAnn and Ed MellChantal MenardGeorge MetropoulesViolet MetropoulesNatalie Metropulos

Michael Engdahl, Esq.Kevin MihmAdam MillerCassie MillerCharlie Miller and FamilyDave and Cindy MillerDr. Jim MillerKathleen MillerMarian MillerMark MillerNancy MillerRosel MillerScott and Holly Miller and FamilyTim MillsKyle MilneMine Safety AppliancesDina MitchellChris MoatsMichael MogaveroMoio’s Italian Pastry ShopBeth MoirMary & Fran MonizChristine MooneyGail MooreJ. MorelliDebra MorrisDebra MorrisGayle MorrisKris MorrowMountaineer casinoChris MoziejkoAmanda MudgettBrianna MurrayDena MurrayDenise MurrayStephanie MurrayOrest and Jen Mykyta and BaroneNational Hemophilia FoundationThe Rev. & Mrs. James NealGail NedlikLynn NelliganRobyn NicholsTiffany NicholsonGery NietupskiJoe Steele and Nina AvilesNorth Coast PackagingNovo NordiskKathy ObringerOctapharmaDon & Jean OelsligleMike OlsonChris OsmanAudia OttoTracy P.Mandy PalmucciAunt PamJamie ParoneBrian PartridgeMarie PaserbaSheila PassleyPat Catan’s of MonroevilleSarah PattersonMichelle PattersonJustin PecynaErik PedeDalton PefferClayton PegherRebecca PegherMark PelusiPenn Brewery RestraurantPennsylvania Trolley MuseumRichard PensakColleen PentycofeJim PetersKaren PetersonLaura Petrilla

Jillian PevoBarbara PfaffPfizerPhipps Conservatory and Botanical GardensVikki PickardJoe PiscitelloJudy PistereenPittsburgh Airport Area Chamber of CommercePittsburgh Irish FestivalPittsburgh Jet CenterPittsburgh Marriott City CenterPittsburgh Photo Booth, LLCPittsburgh Pirates BaseballPittsburgh PlayhousePittsburgh Public TheaterPittsburgh SteelersPittsburgh Symphony OrchestraPittsburgh Zoo & PPG AquariumPPG PlantPNCThe PollocksCheryl PoolJean PorterStacy and Andy PostlewaitYour nieces and nephews Postlewait-MillerBev & Tim PoundsRita PoundsThe First National Bank Of Powhatan PointBrian PraetzelNancijo PruceRenny & John PutmanPutman Insurance Agency IncClark & Karen RayErla Jean ReevesMonica ReiserSally & Denny ReviJoan ReynoldsDebby RheaMichelle RheamKen RichauDavid RidgeCharles RinglerAlli RingsbyA. Kim RitcheyApril RitcheyAva and Sammi-Dots RitcheyLarry & Terri RitcheySharon RitcheyRivers ClubKatrina and Cody RivettElmira RizzoStephanie RizzoGeorgetta RoachMuriel RobbinsBlaze RogersStephanie RogersLeticia RoseskiDenise RossCathy RosseyNathan RostDawn RotelliniLoretta RotelliniSam RotelliniGianna RotelliniGino RotelliniAmanda RudishRon & Angie RusikDavid and Jennifer RussellJeanine RyanKaren SabanDouglas SainMary Ellen Sainsbury

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Kathy SainsburyLakeside Beauty SalonJeff SalsburyRichard SandersonDave & Richelle SasalaLynn SasalaTriston SasalaAllen SbuxBill SbuxDebby SbuxJesse SbuxSteve SbuxMichelle ScherrahTim SchipperBeth SchmidtMichael SchmittCasey SchreiberJake SchreiberLisa SchroederDiana & Alex SchultiesSchwan’s Home Service, IncSteve SchwartzPatti ScrivanoKatie SeibertBeth SeifertDavid SeifertSenator John Heinz History CenterSeven Springs Mountain ResortSG ScreenprintingDillon SheaEileen & Merle ShearerJack & Mary SheehanRhonda Shemony and FamilyLisa SheranLouise ShoreLauren ShreckengoshJoseph SilipoBeth SimoesBrendon SimpsonEmily SkufcaDorothy SlaterKaren SlaterElisa SlatonAndy SmithGerald SmithKaren SmithMike and Madonna SmithSmithfield Trust CoCarrie SnowballCheryl SnyderJim & Lisa SpadeKarolyn SpagnoloPaul & Julie SpikerJoyce SpindlerMichelle SpragueSpringfield GrilleDiane & Graham StandishErin StandishShea StandishStarbucksStarr Hill WineryCarol StaufferNikki StedingJoe and Maria SteeleMaria Steele-Voms SteinGreg SteinCheryl StephanJennifer SteppMatthew StevensKim & Tom StevensonZach StewartKristy StockmalDiane StonerAustin StraubCaiden Straub

Greg StraubGriffin StraubJanet StraubLeanne StraubMichele StraubMr. and Mrs. Ray StraubRachel StraussRich SuchantErnie and Ruth SuichNatalie SummeyGary SummitSensational SurroundingsDane and Kim SwartzSweetwater center for the artsAmanda SwigerBrad SwigerVivian & Frank SylvesterGerry TTambellini Seventh Street RistoranteTarget at Mt. NeboJeff TaylorSue TaylorVergil TaylorJoanna Taylor StoneLaureen Temple and FamilyThe Andy Warhol MuseumCahouet Charitable TrustThe First National BankThe Kruger Street Toy and Train MuseumThe Original Fish MarketThe Winery at WilcoxArnie ThimonsGabby ThomasLaura and Jamie ThomasDrew ThompsonAshling Thurmond OsborneDawn TiessenJohn TimberlakeLynn TitusMrs. TobinDeborah TomaykoTerry TomaykoTim & Lina TomaykoTim Tomayko, SrBethany ToriskyAnnaMarie TorresTrader JoesTrax FarmsTrib Total MediaErik TriftshauserSteven TrimbleTriple B FarmsJanet TurnerScott TurnerApril TwaddellU and I Inc., USAAlicia UngerKarrin UngerLandon UngerUnited WayUnited Way of Butler CountyUnited Way of Southeastern PAJohn and Missy UnkovicUPMCCharles & Elfrieda UtzVienna VVantageAddison VargoMelissa VargoTyler VargoE.J. VillegasElizabeth and Manny VillegasDina VizzocaLou & Rose Vizzoca

Luc & Marisa VizzocaNick & Marie VizzocaDebra VossKeith & Jen VulhopDorothy WagnerKaren & William WahlenChristine WaidleyDanielle WaiterWalgreens Specialty PharmacyAmy WalkerJeff and Jean WalkerMatt & Leanne WalkerSteph WalkerWalmartWalmart of Cranberry TwpWalmart of RobinsonRobin WalshStephanie & Steven WalshJames WalterKelly and Sandra WalterRoberta WaltzWashington Wild ThingsJohn WdowiakJacki WeeksLinda WeimerLinda WeiselSean WelfhGrandma WellingJesse WellsWHES FamilyMiriya/Howard WhitakerJudy White HuffKaren WhitesmithMary WhitingAlice WiesnerTess WigginsWilhelm WineryD. B. & C. C. WilliamsDonna WilliamsJay WillowLisa WilsonMikhail WilsonPeggy WilsonDennis WinklerKristin WinkowskiWilliam C. WitherupKara WojcikWPCNHF Board of DirectorsGretchen and Lance WyattEmily YanchakYanni Partners, a Division of GBS Consulting, LLCJeanette YevoliGary YoungSadie YurkovichKaren and Wayne ZientarskiLynn ZdinakJordana ZegerMindy ZehMindy ZehLei ZhangZiccardi Patios & Sunrooms Inc.Vicky Zyra

Please forgive any errors and omissions. If your name was omitted, we sincerely apologize for this oversight. Please contact the Chapter and we will ensure you are recognized. We appreciate every donation.

2011 NHF Annual Meeting

Submitted by: Alicia Unger, mother of 20 month old, Landon and 2011 NHF Annual Meeting Grant Recipient

My son and I were fortunate enough to receive a grant from WPCNHF to attend the 2011 National Hemophilia Conference. This was big excitement for me as I am always eager to gather more information and connect with other families within the bleeding disorders community.

I attended various seminars during the conference, each of which I happily walked away with a better understanding of information learned in the past or had been taught something completely new. I gained a lot of knowledge about new medications coming in the future and learned how I can be the best possible advocate for my little boy. I was also glad to attend a seminar that explained the differences between the four largest bleeding disorders. I didn’t realize that each disorder can have such different complexities.

I was truly inspired by going to the legacy of Ryan White session. This story was a real heart breaker, but Mrs. White and her son are such inspiring people! It was wonderful to learn that Ryan had his head held so high through such difficult times and challenges he faced. I did cry the entire time, but it’s great to see how far the Hemophilia society has come.

We thoroughly enjoyed our time in Chicago and very much appreciate the opportunity WPCNHF provided us in going! We look forward to attending again in the future! Thank you!

Alicia and Landon Unger enjoy the final night event at NHF’s Annual Meeting

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Highmark & UPMC Contract Update

Diane S. Standish, LSW

There is news on two fronts in our Western Pennsylvania insurance saga. First, the PA House of Representatives passed a bill (HB 2052) in December that would allow the state to extend the June 30, 2012 expiration date of the Highmark-UPMC contract, then force both parties into mediation and binding arbitration. The

bill will now go to the PA Senate, which is already working on a similar bill.

Second, as you may have already heard through the media, Highmark and UPMC have announced that Highmark subscribers will be able to continue to see UPMC doctors at current in-network (cheaper) rates until June 30, 2013. (The contract ends on June 30, 2012, but has a one-year phase-out time.) Previously, it was clear that Highmark could still use UPMC facilities at in-network

rates until the 2013 date, but there was uncertainty about whether Highmark subscribers could still see UPMC doctors at those rates. Now it is clear that both UPMC facilities and doctors will still be included (at in-network rates) in the Highmark network through June 30, 2013.

UPMC is still refusing to consider negotiating a long-term contract with Highmark beyond June 30, 2013. However, most observers see the recent announcement as a positive step that may

bode well for the future of these two health care giants.

As a reminder, the Hemophilia Center of Western PA will continue to provide services to all of our patients regardless of insurance coverage. Both the Center and Chapter staffs are keeping a close watch on the Highmark/UPMC situation and will keep you posted.

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The event ended with a beautiful Donor Reception on November 21 where Val Bias, CEO of the National Hemophilia Foundation and Dr. Margaret Ragni of the Hemophilia Center of Western Pennsylvania inspired us with their encouraging words.

It was an exciting event and we hope to continue the tradition for years to come. Mark your calendars for November 16 - 18, 2012. Look for more information to come!

Take A Bough 2011 (continuted)During the week of November 14 – 17, numerous volunteers helped transform an empty store into a holiday extravaganza by setting up 93 trees, wreaths and tabletop displays donated by individuals and businesses from all over Western Pennsylvania.

From November 18 – 20 the event was open to the public. Hundreds of people passed through the decorated holiday items throughout the three day event. We offered a jewelry make-n-take craft as well as a children’s craft option where kids of all ages were able to decorate ornaments to take home. A raffle for a $600 Tree of Gifts was offered for $5/ticket and was won by the Shoemaker family.

A very big thank you goes out to all who sponsored the event, donated trees, wreaths and table top displays and all who volunteered their time to help make the event such a success.

Cash Sponsors:Accredo/HHSBaxter BioscienceBayer HealthCareBiogenIdecBioRxCSL BehringGeorge A. Pegher, Inc.Grifols

Hemophilia Center of Western PennsylvaniaITXM/Central Blood BankMSANovo NordiskOctapharmaPfizerScott Miller, Attorney at LawWalgreens Specialty Pharmacy

In-Kind Sponsors:Multi Print MediaPat Catan’s MonroevilleTrib Total Media

Donations of Decorated Items:Casey Mahaven EventsMike and Madonna Smith FamilyCamp Hot-to-ClotCSL BehringLaureen Temple and familyWPCNHF Board of DirectorsHemophilia Center of Western PennsylvaniaWPCNHF Chapter MembersJanet Barone, Jim and Cameron CedenoPat Catan’s MonroevilleWHES FamilyAlicia UngerDarla Clayton FamilyRita and Andy DullGrey’s Girls (Dawn Rotellini and her friends)Christen and Joe HerndonSusan and Roger EyrollesMichael, Karen, Christian and Taylor Covert

Clayton Pegher and Jennifer Wahlen PegherMelissa Kendrick and Jim ConstantinDebbie LoweryDiane, Graham, Shea and Erin StandishCheryl, Daryl and Jeryl MarksSue GaerttnerMaria Steele-Voms SteinJoe Steele and Nina AvilesKaren SpagnoloRhonda Shemony and FamilySensational SurroundingsBiogen IdecTerry EmlingScott and Holly Miller and FamilyPremier Management and Business ConsultingDebsiki FamilyJoe and Marie SteeleBill and Karen WahlenMeg and John KrenitskyJennifer BrauserHampton DentalMary Ellen Sainsbury

NHF CEO, Val Bias, addresses supporters ofWPCNHF’s Holiday Tree Auction

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Planning for the trip to the ER•Callyourhemophiliatreatmentcenteroryourphysician.TheycancontactyourlocalERtoletthemknowyouare

a hemophilia or von Willebrand (vWD) patient and you are on your way. What is the phone number? _________________________________________________________

•Knowyourspecificdiagnosisandtreatmentplan.Haveyourexactdiagnosisfirmlyinyourmind,orbetteryet,written out.

What is your diagnosis? ______________________________________________________________

•Clottingfactorandinfusionsupplies(checkwithyourlocalERtomakesuretheywillallowyoutobringtheseitems).

•AnicepacksoyoucanbeginicingandelevatingthebleedingjointormuscleonthewaytotheERandcontinueonce you arrive.

•Aletterorwalletcardfromyourphysicianthatoutlinesyourtreatmentregimen,includingdosage,sothatnecessary treatment can be administered without delay. Make sure the letter includes your physician’s name and phone number in case the ER physician needs more information regarding your hemophilia diagnosis.

•Snacks,books,musicandyourfavoriteblanketorpillow? Do you have an ER bag? _______________________________________________________________

•Yourknowledgeofhemophilia/vWDfacts.Don’texpectERpersonneltobeexpertsonbleedingdisordersorthesymptoms of bleeding disorders. Know enough about your diagnosis and its treatment to be able to explain it to personnel.

•Bespecificwiththetriagenurse.Describeyourbleedinspecificandpreciseterms.Don’tdownplaythesituation.

•Factorfirst.RemindtheERnursethatthefirstthingyouneedisfactor,notaCATscanoranx-ray.

•Don’tthrowoutthefactor.Vialsoffactordon’talwaysmatchupexactlywiththedosagecalculatedandtheERnurse’s first instinct may be to toss out the leftover factor. Instead, remind the ER staff that leftover factor should be infused.

•Bepreparedforquestionsaboutbruises.Ifquestionssoundthreatening,staycalmandremindstaffmatter-of-factly that bruising is common among people diagnosed with hemophilia or vWD.

•Bepatientbutpersistent.Ifyouhavenotreceivedtreatmentafterareasonableamountoftime,contactyourhemophilia treatment center or your primary care physician.

•Stayinformedandincharge.Becarefulaboutconsentingtoinvasiveproceduresunlessyoufullyunderstandthem, are sure of their necessity, and pre-treat ahead of time. This includes unnecessary blood testing.

•AlwaystreatERpersonnelwiththerespectanddignityyouwantforyourself.Yourcalmnessandtolerancelaysthe groundwork for a positive collaboration with the ER staff.

References:The Emergency Room: Prepare to Succeed. Canadian Hemophilia Society website.

11

Board of Directors PresidentScott E. Miller, CPA, Esq.

Vice PresidentMike Covert

TreasurerSam Rotellini

SecretaryJana Lambert

DirectorsJoan Reynolds

Beth Villegas

Judy Carmassi

William Martin, DDS, FAES

Nathan Rost

Directors EmeritiJim Loll

Missy Unkovic

StaffExecutive DirectorJennifer Wahlen Pegher

Office AdministratorJanet Barone

Development Director Madonna McGuire Smith

Staff office hours are Monday through Friday from 9 a.m. until 4 p.m. Every attempt will be made to return calls received during regular office hours on the same day.

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Western Pennsylvania Chapter of theNational Hemophilia Foundation

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Western Pennsylvania Chapter of theNational Hemophilia Foundation20411 Route 19, Unit 14Cranberry Township, PA 16066Phone: 724-741-6160Toll Free: 800-824-0016Fax: 724-741-6167info@westpennhemophilia.org

Our Mission:The Western Pennsylvania Chapter of the National Hemophilia Foundation is leading the way in Western Pennsylvania in improving the quality of care and enriching the lives of those with bleeding disorders through education, advocacy, resource, and referral.

*Please note that an internet connection is required to receive infusion reminders.

This app is not intended to offer or replace professional medical advice. Speak to your nurse or physician if you have any health concerns. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

© 2011 Bayer HealthCare Pharmaceuticals Inc. All rights reserved. BAYER, the Bayer Cross and Living with Hemophilia are registered trademarks of Bayer. Living Fit! A Joint Effort and FactorTrack are trademarks of Bayer. iPhone and iPod touch are registered trademarks of Apple Inc. KN10001210

ANYTIME, ANYWHERE:

Keep your Factor on Track!

LEARN MORE ABOUT DOWNLOADING FACTORTRACK AT

LivingWithHemophilia.com/FactorTrack

The first FREE, customizable mobile appdesigned to help you track and recordyour hemophilia A Factor VIII infusions:

If you’re on a prophylaxis regimen, the app reminds you when to infuse.*

If you infuse on-demand, the app records your bleeds and infusions.

Hemogram is published quarterly by the Western Pennsylvania Chapter of the National Hemophilia Foundation. The contents of this newsletter may be reproduced freely. The material in this newsletter is provided for your general information only. WPCNHF does not give medical advice or engage in the practice of medicine. WPCNHF under no circumstances recommends particular treatments for specific individuals, and in all cases recommends you consult your physician or local treatment center before pursuing any course of treatment.